UPDATE SINCE I WROTE THE POST BELOW:
Mom has more than one Dr. and the second Dr. said she won't be home this week, so I'm praying she'll be protected from these super-infections that the other Dr. is afraid of.
I'm home struggling again today. Couldn't get to the hospital no matter how I tried.
The Dr. shocked us by saying that Mom will probably come home in a few days. That's good news, but its not enough time to get the medical equipment rented that she needs, or hire the help we will need. First he said she would be in the hospital for 4 to 8 weeks! Then he said that the IV he wants her on for 2 months can be given at home. Earlier, he said there is a new, dangerous medicine that he wants to try her on, and wants her in the hospital in case she has some bad reaction. I guess we will be dealing with any frightening reaction on our own. She's really not ready to go home. Mom can not even walk yet. She can only sit up for 5 minutes without terrible pain. They want her out of the hospital because there are so many super-infections there that could kill her.
So I am calling the nursing agencies to hire a nurse and also to hire someone to help make simple meals, clean, and run errands. The nurse can only come for half an hour in the morning and half an hour in the evening, so I will be her full time nurse while I'm on oxygen and using a walker.
I'm again so frustrated with people who say "If you need anything, just call me.", then I ask the smallest little thing and they say they won't. They shouldn't say it if they don't mean it.
I am so exhausted that it's scary. I come in the door, go downstairs and put my oxygen on and just fall asleep for a couple of hours before I can even change into my night clothes. Some nights I don't change at all. I just sleep in my day clothes. I am passing out after every 2nd sentence as I write this. Dang! Our life is like a nightmare coming true. Both of us getting sicker and sicker and not able to take care of ourselves or each other, but because I'm younger, I am expected to do so many things that are making me sicker every day!
The Dr. is only interested in getting her healed from her surgery, he won't look at any of the problems that sent her to the hospital in the first place. I have to take her to her own Dr. for that, and I will be lifting a wheelchair in and out if the trunk and pushing her in a wheelchair through a very long mall to do that.
Staying at the hospital up to 15 hours a day, then coming home to just collapse has been very hard, so on the weekend, and today (Tuesday) my body just crashed. I was a passing out all day and I could barely stand or walk due to pain.
I have been very clumsy and forgetting the most simple things, can't think of the right words when I talk.
I just took a break from writing this and called my Dr. she says she thinks my lupus is affecting my central nervous system. When it does that, it acts a lot like M.S. (multiple sclerosis). She listed the exact symptoms I'm having. Then add lupus symptoms and the intense pain of TN, (trigeminal neuralgia http://tinyurl.com/TNwiki) and Mom and I are in rough shape to help each other.
Wow, it took 5 hours to write this. That's crazy! So tired.
Going to call Mom then crash. Thank you all for caring. Don't know what I'd do without my internet friends.